Please! Read me...

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Mohrfamily
Posts: 32
Joined: Tue May 22, 2018 4:04 pm

Please! Read me...

Postby Mohrfamily » Wed May 23, 2018 5:38 pm

The doctor has labeled my DH stage 4 colon cancer with liver mets as palliative?! He is starting Folfox do I have hope? Palliative doesn't sound very proactive just an easy slow transition down? Please anyone help!
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please! Read me...

Postby Lee » Wed May 23, 2018 6:53 pm

Get a 2nd opinion at a major cancer treatment center or major cancer hospital. There are many people on this board who also had liver mets and are very much NED (No Evidence Detected) today.

Here is one person who's DH had liver mets and is NED today

viewtopic.php?f=1&t=59542

Please don't give up hope just yet,

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

Re: Please! Read me...

Postby NHMike » Wed May 23, 2018 8:20 pm

Folfox is 5FU and Oxaliplatin and Leucovorin and it's used to treat cancer. The side-effects can be quite tough so it's a bit odd to see it regarded as palliative.

There are stage 4 folks that are NED today, or are kept alive through Chemo, waiting for the day when science can come up with a cure. The major cancer centers also have access to clinical trials which may work for some particular cancer types.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Mohrfamily
Posts: 32
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Thu May 24, 2018 12:53 am

Thank you for that. We talk with the oncologist today as we only talked to the nurse practitioner about chemo education Tuesday but she told us the PET results, the percentages from testing and told us his doctor marked him palliative. I am going to bring it up to my husband today about a second opinion if we don't leave this appointment without a better idea why palliative. Cleveland clinic has an office 15-20 minutes farther away but not like I'd be a 2 hour drive all the time.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

Re: Please! Read me...

Postby stu » Thu May 24, 2018 1:44 am

Hi ,
It was a word that rocked my world too. Now I see it as a necessary evil to allow data collection for resources to be planned for within hospitals. Not so good for predicting individual health needs going forward .
My mum I guess is still a “palliative” patient but is in better shape than her “ non palliative” friends.
All the very best to you both .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please! Read me...

Postby Lee » Thu May 24, 2018 10:51 am

Mohrfamily wrote: . . . . Cleveland clinic has an office 15-20 minutes farther away but not like I'd be a 2 hour drive all the time.


Cleveland Clinic would be a great place to get that 2nd opinion.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
betsydoglover
Posts: 917
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Please! Read me...

Postby betsydoglover » Thu May 24, 2018 12:20 pm

I know how hard that is to hear - but try to put it in the back of your mind. When I was diagnosed Stage 4 liver mets in 2005, the official position of ASCO (Am. Soc. of Clinical Oncs) was that all Stage 4 treatment was palliative. It hit me like a ton of bricks when I saw that. But then I ignored it and I'm not sure they usually talk that way now.

See my signature - chemo certainly wasn't just palliative for me (and there are many other survivors of stage 4 here.) My recommendation (difficult I know in the early part of treatments) is to ignore this and move forward with treatment with the goal of a cure.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: Please! Read me...

Postby rp1954 » Thu May 24, 2018 7:01 pm

NED typically requires firm, proactive steps that require you to gather extra information, to carefully marshal and conserve resources, and to strongly advocate for yourselves. Many important steps are not standard and require extra thought and effort. The more details you share, the more people can help you.

I agree with the major cancer center(s) recommendation, asap. Most NED, major liver met survivors here got Hepatic Arterial Infusion at MSK. Another advanced liver surgery for "hopeless" mets, is ALPPS. I think MD Anderson offers it now, not sure about MSK.

Multimodal treatments, multiple treatment modes, advanced, sequential and parallel, are an important concept. At some level, these are definitely not standard and not comprehensively available at any one place.

Complementary and experimental medicine has the most fragmented modes and these treatment disciplines are effectively absent, or relatively weak, in centers of standard medicine. For us, robust steps with complementary and experimental medicine with a biological basis have been as important as the mainstream ones, especially for results unobtainable anywhere else with nutraceuticals and mild, generic drugs. Our experience on some of these steps.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

User avatar
LeonW
Posts: 345
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Please! Read me...

Postby LeonW » Fri May 25, 2018 6:59 pm

Mohrfamily wrote:The doctor has labeled my DH stage 4 colon cancer with liver mets as palliative?!

What do you mean with 'labeled'? I hope for you that it just a label on on your file. What do your docs say?

My file said palliative too when chemo started. We took it as a blow / were extremely disappointed and confused and demanded to see the onc before starting the first chemo cycle as we had never talked palliative before. We had agreed to do the chemo in an attempt to make the liver mets shrink and to go after these mets once they responded. Finding the P-word on the cover of the file was devastating.

Oncs confirmed that there was no change in the plan and that treatment still was with curative intent. Irrespective of that label on the file. And that labeling it as palliative was just a protocol thing: any stage IV with unresectable mets is palliative, by definition. But that we were still going for the 30% chance that the liver mets would respond / shrink enough to make their resection possible. All as agreed earlier. Irrespective of the P-word,

'Palliative' remained on the cover of my file, right thru the chemo, the liver job and dismissal. I bet it's still on the file today, some 5-yrs after that frightful discussion. And I'm still clean today. I hope - CT and CEA checkup will be 2 weeks from now.

I hope you'll fare the same.
Best wishes, Leon
Dec 2012 - 7 cm mass MM @65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen, 2/26 nodes, IVa T3N1bM1a, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (delirium, liver failure, emboli, encephalopathy) pCR - cancer gone
2014/15 - recovery/benign polyp
2016 - new town, new life
clean CTs and (1.3-1.4) CEAs: 4x2014, 6x2015-17, 1x2018
June 2018 - 2 polyps, 5yr survivor

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: Please! Read me...

Postby mpbser » Sat May 26, 2018 6:43 am

The other comments express my sentiments better than I can articulate. I would just like to add our story. My husband went to a few different cancer centers at first. The first was our local cancer center which is very small (only 2 or 3 oncologists and none specialized in colorectal cancer). That just was not going to be an option because there was no way he wasn't going to see a specialist. Then we went 4 hours away to Dana Farber and Mass General in Boston.

The oncologist at Dana Farber didn't use the specific term "palliative" but his attitude and demeanor was grave and pessimistic. The oncologist at Mass General was completely different. He was optimistic and spoke as if there was no doubt that he could "beat this." Dana Farber was like night (lights out) and Mass General was like day. My husband chose day. One year later, he is NED.

I second the opinions here that recommend going to the Cleveland Clinic. An extra 20 minutes drive each way will be worth every second.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Mohrfamily
Posts: 32
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Sat May 26, 2018 6:59 am

mpbser wrote:The other comments express my sentiments better than I can articulate. I would just like to add our story. My husband went to a few different cancer centers at first. The first was our local cancer center which is very small (only 2 or 3 oncologists and none specialized in colorectal cancer). That just was not going to be an option because there was no way he wasn't going to see a specialist. Then we went 4 hours away to Dana Farber and Mass General in Boston.

The oncologist at Dana Farber didn't use the specific term "palliative" but his attitude and demeanor was grave and pessimistic. The oncologist at Mass General was completely different. He was optimistic and spoke as if there was no doubt that he could "beat this." Dana Farber was like night (lights out) and Mass General was like day. My husband chose day. One year later, he is NED.

I second the opinions here that recommend going to the Cleveland Clinic. An extra 20 minutes drive each way will be worth every second.


Thank you we have 2nd opinion info coming to us to check out Cleveland Clinic
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30

Mohrfamily
Posts: 32
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Sat May 26, 2018 7:01 am

Lee wrote:
Mohrfamily wrote: . . . . Cleveland clinic has an office 15-20 minutes farther away but not like I'd be a 2 hour drive all the time.


Cleveland Clinic would be a great place to get that 2nd opinion.

Good luck,

Lee


We are getting info for a 2nd opinion at Cleveland Clinic. My DH is just worried its to late since he has a colonoscopy and endoscopy and port place Tuesday and chemo Wednesday.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

Re: Please! Read me...

Postby NHMike » Sat May 26, 2018 7:03 am

mpbser wrote:The other comments express my sentiments better than I can articulate. I would just like to add our story. My husband went to a few different cancer centers at first. The first was our local cancer center which is very small (only 2 or 3 oncologists and none specialized in colorectal cancer). That just was not going to be an option because there was no way he wasn't going to see a specialist. Then we went 4 hours away to Dana Farber and Mass General in Boston.

The oncologist at Dana Farber didn't use the specific term "palliative" but his attitude and demeanor was grave and pessimistic. The oncologist at Mass General was completely different. He was optimistic and spoke as if there was no doubt that he could "beat this." Dana Farber was like night (lights out) and Mass General was like day. My husband chose day. One year later, he is NED.

I second the opinions here that recommend going to the Cleveland Clinic. An extra 20 minutes drive each way will be worth every second.


I guess a positive attitude in the doctor helps, along with a positive attitude in the patient. My local oncologist told me that MGH was better at CRC than DFCI for very difficult surgical cases.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Please! Read me...

Postby Aqx99 » Sun May 27, 2018 4:17 am

Mohrfamily wrote:The doctor has labeled my DH stage 4 colon cancer with liver mets as palliative?! He is starting Folfox do I have hope? Palliative doesn't sound very proactive just an easy slow transition down? Please anyone help!


Palliative simply means that they want to treat him as a whole. They want to treat the stress, pain and side effects, as well as the cancer itself.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Mohrfamily
Posts: 32
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Sat Jun 02, 2018 7:15 pm

My husband surgery for his port placement to the left side of his chest went well. Will he ever feel normal with it? He can't rest his arm on the window when driving for more than 10 minutes he's just sent my heart racing talking about pain in his (left) arm that had me thinking heart attack. Can someone shed a little light on the future as far as this goes?
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30


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